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Von Willebrand disease? (Sorry TMI)

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14 years 4 months ago #15708 by grasshopper
Von Willebrand disease? (Sorry TMI) was created by grasshopper
My daughters Haematologist says she wants to rule out anything hereditory at her next appointment. I have always had very heavy periods (6 times heavy than they should be) with lots of clots and lots of pain. I also lost a lot of blood in all three labours and bleed very heavily for 13 weeks after having each child. After my last pregnancy (sorry TMI) I had clots the size of mangos with blood pouring continuously for 15 mins after. I had assumed that I can't have a low platelet count too as it would have been picked up when I was pregnant. However, I have been researching and I have read that in Von Willebrand disease when you are pregnant the Von Willebrand Factor increases and in Type 2b you have a reduced platelet count. Does anyone know anything about Von WIllebrand Disease? I am wondering whether we could both have this?
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 4 months ago #15796 by Sandi
Replied by Sandi on topic Re: Von Willebrand disease? (Sorry TMI)
The only way to know is to get tested. It's possible...
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14 years 4 months ago #15802 by Bunnie
Replied by Bunnie on topic Re: Von Willebrand disease? (Sorry TMI)
A few people over the years a few folks have posted who have VWB-2. My sister has a myloprolifc bone marrow condition and has "aquired" Von WIllebrand's which is her bodies compensation for too many platelets.

Mostly it's heretiday like hemopholia and like hemopholia is a missing factor in the clotting sequence. My sister had to have IV's of factor eight when they removed her spleen. The only way to know is to have testing done as Sandy says and if you're concerned it never hurts to discuss with the hemotologist.

I'd go back and re-read the article, increasing levels of VWB during pregnancy may mean that the body compensates and produces more factor eight as a protective mechanism for labor and delivery. There are just so many causes of heavy menstral issues (thyroid, fibroids, etc) that I won't take that as the only link to ITP without some additional symptoms.

"I am an old man and have known a great many troubles, but most of them have never happened.\" — Mark Twain\\\\\\"Worry is a misuse of the imagination.\" — Dan Zadra
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